Comments
The comments that were found in the Guest Book covered a variety of subjects. The comments regarded:
- A young child – 6
- CP – in general sense – 5
- CP – specifically CP and aging – 5
- Specific Symptoms
- Fatigue – 3
Spasm – 3 - Speech Impediments – 1
- Requesting a Support System – 6
- Requesting Research on CP and Aging – 4
- Requesting Research on CP and High Blood Pressure – 1
- General Comments Praising Website – 2
Specific Resources Suggested:
Martha Lloyd Community Services (marthalloyd.org)
Guest book
63 entries from December 3, 1998 - March 17, 2000
Where they came from:
- AOL - 2
- Just Surfed In - 48
- Friend - 4
- Net Search - 2
- Yahoo – 8
What they commented on:
There were three distinct groups of people who commented on the guestbook: one group just left their name, and a
positive comment about the site (13), the second group had private mesages for CP and Aging staff (12) and the
final group were interested in either gaining information or providing information (38).
Those comments which provided information (2) dealt with specific sites or facilities that were dedicated to CP and Aging. The US Sport and Fitness Centre for the Disabled, and the Program at New York University are two examples of this. The rest of the comments (36) were requesting specific information related to CP and Aging. These are summarised in the following list:
- General CP information (9)
- Request for Support Groups/Chat Rooms/ E-pals (8)
- Aging stories (7)
- Research Studies (3)
- Famous People with CP (2)
- Herbal medicines and the success of it (1)
- Assistance for more head control (1)
- Pain control (1)
- Group Home Living situations (1)
- Durable medical equipment (1)
- Information about American Insurance Coverage (1)
- Communication tips (1)
Comments
The following provides a summary of the comments from Volumes II and III, spanning until March 17, 2000. Since Feb 1998, there have been 41 different comments regarding a number of different topics.
The issues that were covered are as follows:
- Heel cord abductor surgery (1)
- Tendontis (1)
- Hip Diplasia (1)
- Benefits of Specific Leisure Activities
- Swimming (3)
- Biking (1)
- Massage (1)
- Exercise (3)
- Feldenkrais Method of movement (1)
- Importance of Sport Rehab Professionals for information (2)
- Support for Aging (7)
- Importance of Self-Advocacy (1)
- Request for information on
- Scolosis (2)
- Pre Eclampsia and heat (1)
- Epson Seizures (1)
- Housing for Married People (1)
- Specific Medications (Baclofen, Artane, Dantrium) (3)
- Pressure Chamber Use on Adults (1)
- Leigh's Disease and CP (1)
- Electro Stimulation/Biofeedback (1)
Foreword by Pierre Malraison
This page has been here for about a year and 4 months, but about a year ago I put it into Yahoo and started to get some significant traffic. Ruthanne Stephenson has offered to summarize what we've got so far.
The guestbook
This is a summary of the Guestbook Entries from August 16 1997 until
April 8,1998.
There were a total 65 messages
Female visitors (40)
Male visitors (14)
(Some were from the same person)
Either the messages were asking about general information (research-type or literature) or they were asking about a specific person who had CP.
Of those that asked about a specific person;
Self(14)
Another person in their lives(16) messages
The age of the person with cp ranged from
| 5 mo - 10 years | *********(9) |
| 10 - 20 years | ******(6) |
| 20 - 30 years | *****(5) |
| 30 - 40 years | *****(5) |
| 40 - 50 years | *******(7) |
| 50 - 60 years | 0 |
| 60 - 70 years | *(1) |
Many people appeared to just want to share with someone about the condition, not necessarily ask for information, or they just signed their name (20)
Several wanted general information about the condition and changes relative to aging as a whole (31)
Specific issues raised were:
- Exercises for strengthening (1)
- Potential for Behavioural Problems (1)
- Potentail for Bowel Problems (1)
- Reversal Techniques for Muscle Atrophy (1)
- Social Skills/Supports (5)
- Life Expectancy (1)
- Fatigue (1)
- Pain (1)
- Need for An Advocate for Increased Treatment Options and Research for Adults with CP (1)
Summary of Comments
November 1997 - May 1998
There were 32 comments submitted on the form.
Several people wrote in to tell of helpful treatments:
Chinese Medical Way (focusing on the whole body versus the specific area of injury) utilizing Chinese Herbs, Chinese Foods, TaiChi, and Chinese Massage
Use of Range of Motion Exercises for flexibility Strength exercise for mobility
Swimming, Massage Therapy, Chiropractic services, A dry hot climate, and Cp Yoga to prevent pain, spasticity, and atrophy.
Use Stationary Bike to increase Co-ordination
Feldenkrais Movements (along with traditional weight training and aerobic walking
Other topics of interest included:
Need for Research on CP and Aging as a means to evaluate the success of pediatric treatments of CP
Relationships and CP(2)
General Coping with CP
Need for CP sufferers to become self-advocates in their medical care.
Use of Health Professionals with a Sports Medicine Background
Theory that the Changes are normal age changes, but accelerated because of the CP
Specific Questions Asked.
Number of CP sufferers who are now baby boomers?
Normal Aging versus CP Aging Changes?
What are Epson Seizures?
General Expectations of Aging with CP (8)
It was interesting to note that (3) comments spoke about the unneccessary surgeries that they had suffered through, and how it has accelerlated their disabilities
About Ruthanne:
October 26, 1999 BackLinks
Opinions expressed here are personal and do not reflect
the views of Spatial Technology or Parkwood Hospital
This page hosted by
Ruthanne is 59 years young, originally from Windsor, Ontario, Canada.
Now living in London, Ontario, she is working very hard to move out of
the complex care institution, into her own home. She has a
communication device which helps her to speak and a very special cousin,
named Bill who helps her any way he can. Ruthanne spends her most
enjoyable times socializing, going out with friends, and working on the
computer with her Recreation Therapist. She likes to hear the comments
that come through this page, to know that others are dealing with the
same feelings and issues that she is.
Ruthanne sent a picture:
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